anyone experience coming off combination prednisone/methroxecate/plaquinil?

[lilydee]

Greetings,

I started last year april on 20mg prednisone for muscle rheuma and tapered off to 10 in december when my rheumy introduced 10mg methotrexate per week and then last month plaquinil (hydroxychloroquinesulphate) 200mg daily. She said that this was to help the methotrexate help bring down and stop the prednisone. I'm currently doing alt. 7.5mg and 5mg. My question is after I taper off prednisone then does anyone have experience how the methotrexate and plaquinil are stopped? I hate the side effects bloating moon face etc and afraid for eye problems with the plaquinil hairloss and also liver problems with the methotrexate. My liver is doing good so far and I'm taking calcium chew two 500mg/400 I.E tablets per day and 10mg folic acid per week. Looking forward to hear from some one. I just turned 60 in January.

[HeronNS]

Do you have polymyalgia rheumatica?

[lilydee in reply to HeronNS]

I do not think so. My initial diagnosis was for muscle rheumatism I read about PMR and do not think I have that. I will ask my rheumy next time I see her what it is I have exactly.

[PMRpro Ambassador in reply to lilydee]

Whatever muscle rheumatism is. There are people who would call that PMR.

[lilydee in reply to PMRpro]

Thank you. I will check up on it. I'm sure some people have combination things as well or the onset of for example RA can be MR (muscle rheuma) etc. I also read somewhere that the medical world moves from one way of calling something to another and PMR is widely used now. I am therefore curious why my rheumatologist diagnosed me with and called it muscle rheumatism and not PMR. I will ask them on my next visit later this month. What's in a name right? 😊

[fmkkm]

Hi lily,

I have stuck with just prednisone. I tried plaquinil 3 years ago and it made feel terrible so I stopped it. I have not heard of anyone on this site who is on the 3 drugs all at once. Best to you, fm.

[lilydee in reply to fmkkm]

At first they gave me only a few pills of plaquinil they said to see if I experienced any side effects. I am a bit confused because I thought I did not have any and happy I would be losing the prednisone weight. But being in plaquinil now as well I have gained weight and my stomach especially is very big like I'm 5 months pregnant. Im confused because my appetite has gone down which is what I expected from the plaquinil and also I had hoped the prednisone side effects to go away since I am now down to 5mg I day. I started that last week after toggling between 7.5 and 5 mg anticipating the effects of plaquinil to kick in which is said to take a few months. The three meds together seems to be a strategy at first to reduce and eliminate prednisone. The aim is to eliminate prednisone. Now a week on 5 mg a day I just my hands a bit stiff and swollen but not alarming. I'm sticking with the 5 mg as much as I can hoping my own adrenaline curves up. Thank you for your best wishes.

[PMRpro Ambassador]

I'm sorry, but NOTHING would induce me to try that lot! There is no evidence it makes that much difference - and if she led to you to believe it does, I would be asking for the documentation.

[lilydee in reply to PMRpro]

I did find writing abt the three meds strategy on the internet. I've been researching on the internet extensively. My doctors are Dutch. They are trying to find the right dmaird, I probably misspelled that, anyway to fit my particular situation and how my body reacts and Improves as best as possible with the minimum medicine.

[Linny3]

I have been on methotrexate and have come off of it. Still on prednisone. When I stopped the Meth. all the pain came back due to pmr and had to go back up on pred. It has been a 2&1/2 year struggle. I am now back on methotrexate and 13 mg. prednisone. Just can't seem to get ahead of this ordeal.

Good luck with it all

[Hidden in reply to Linny3]

I’ll catch with you on Monday re this Linny

MrsN

One Shattered Nana 😉

[Hidden in reply to Linny3]

Hi Linny

Sorry, Monday was a bit busy but l hadn’t forgotten to reply.

I’ve been on Methotrexate twice, the first time as l couldn’t reduce from 20mg, l was actually on 18mg when l started & l got down to 7.5mg: it was then stopped for Surgery & Chemo however, 14months later l could feel the PMR symptoms resuming, so l restarted Methotrexate & happily got down to 5mg.

Unfortunately, l developed a Fatty Liver, picked up by routine MXT Blood Tests & Diagnosed after by an Ultrasound but a Fibroscan proved there was no stiffening of my liver.

As a result of being off the MXT l am now back on 12.5mg Pred due to all the old symptoms recurring, so l’m waiting to restart MXT & hopefully get much lower on the Pred.

Kind Regards

MrsN

[lilydee in reply to Linny3]

Thank you. you too. I just wished I had done research before starting prednisone. My doctor had not told me anything. All she said was that this med would make me feel better in two days. And it did. I was so happy and was very naive to it all. I had never had to take meds for anything and this sudden impairment in my mobility was just something I could not wrap my brains around. As I answered to someone else in this group I just want to get off prednisone and doing it very carefully because by now I listen to my body.

[GerriMc]

Like a lot of folks on here, I’m on Pred and MTX. A friend of mine who suffers from Lupus takes Plaquinil and occasional doses of Pred when flaring. Don’t think I’ve ever heard of anyone taking all three.

[lilydee in reply to GerriMc]

Thank you for your info. I took my son, who looks like a bodybuilder, to my appointment with my internist. Here I see an Internist every 6 or so weeks and a rheumatologist every three months. I say a because every time I go it's an different one but it's the same clinic so they have my stats. So my son was there to help me make my case to this internist that I was not to be treated like an experiment. Since then I noticed that they are more concerned in my particular condition. I matter to somebody and should matter to them. I'm not just a patient they could experiment on and write in reports about. All that said I think that is why when they noticed the 10mg MTX was not sufficient did they not raise it but used the plaquinil to kick it up while we continue to slowly lower the prednisone.

[GerriMc in reply to lilydee]

Great that you had your son for support. Hope it works out for you! X